Love for Lucas: The influence of one little life

July 17, 2011

One short-lived life, filled with love and uncertainty and a thousand questions for every one answer.

One life that can touch the lives and hearts of people that may have never had the opportunity to meet.

On May 21, Lucas Patrick Hardman was born. His parents, Brian and Nicole, both of whom I have known for a very long time and have had the joy and opportunity to call friends, welcomed their son to the world with all the excitement, enthusiasm and pride that first-time parents can.

Sadly, it was discovered only a few days later that Lucas was born with a very rare form of a very rare disease called Epidermolysis Bullosa, or EB.

The genetic skin disease has no cure, and in its most severe cases can cause death at a very early age. It causes blistering of the skin at the slightest touch and can cause blistering internally.

His form of EB, junctional herlitz, is considered the most severe and has a life expectancy of only two years.

Lucas was only five weeks old when he passed away from the disease June 24.

In his five weeks of life, little Lucas was able to touch more lives than most of us can touch in several dozen years.

It didn't take more than a minute to see that Lucas was a beautiful and special little boy.

His body was very thin and small, and his skin was blistered, but his eyes were so large and bright. I was very lucky, and I truly mean lucky, to have spent a couple hours with Lucas before he passed away, and I was mesmerized by his eyes.

I stood over him, and he looked up at me. It was almost like he knew what was going on, and in the chaos of his situation, his eyes were calm.

Children who are stricken with EB are often called ''butterfly children,'' because their skin is as fragile as a butterfly wing.

A lesson that Lucas taught me was to remind me of how fragile and uncertain life can really be. Life can be taken for granted, as can all the people around us because there is a belief that we have time, and I am very guilty of this.

Too many times do I say ''I'll do it tomorrow'' or ''not now,'' but in many cases that is exactly when I should be doing it - right now.

My son is 2 1/2 years old and my next one is due next month, and through Lucas I have tried desperately to spend all the time I can with my family and to let them know how much they mean to me.

It's hard to understand sometimes why things happen the way that they do. Why such sad and heartbreakingly devastating things can happen to people who don't deserve it, but there is a larger picture at work that we don't understand.

Over the course of the past couple weeks since Lucas left us, a truly amazing thing has begun to happen. People across the country, not just the community that we grew up in, have started reaching out and offering their aid to the family. People have stepped up and started spreading awareness of this disease that most people have never heard of, and it is in the name of this little boy.

Nicole once told me that she knew that all of this happened for a reason, and maybe that reason was so that Lucas could in some way help find a cure for EB.

I've known Brian since we were both in junior high, and we've spent many years together, growing up, becoming adults and experiencing life, but watching him throughout all of this showed me what strength he and his wife have.

A benefit for Lucas has been set up in my hometown, and the benefit hopes to continue working to raise money for the continued research into EB has become its goal.

I can't imagine, and never want to know, what it's like to lose a child, but to watch as these two extremely amazing people turn their sadness and loss into motivation to help others around the world in the battle against a disease that links them is truly inspiring.

Lucas' spirit will endure and will continue to motivate and push those of us who were touched by him to continue to work, not only to find a cure for EB, but also to spend every minute of every day with the people you love and appreciating what time you have with them.

None of us will ever forget that little boy or the lessons that he taught each of us. With a little hope, a lot of work and a lot more prayer, the love that we all share for Lucas will make a big difference in all of our lives.

To learn more about EB, visit www.debra.org, a national organization dedicated to the research and eventual cure of EB.